I saw my rheumatologist in person, after not seeing her since before covid lockdowns. This meant that none of my bloodwork had been done in such a long time. We had a long appointment and she never cuts me short. I was there about one hour, including my lab tests. We talked through all of my symptoms and medications.
The last time we met, she said that she might take me off of Plaquenil, because I never had any improvement on this drug. She told me to take half of the dose for two weeks and see how I felt. If I couldn’t tell any difference in how I felt, we will delete the drug. She said we would also do a trial of removing LDN. I really wanted this to help, but any improvement I felt only lasted about two months.
Drugs for Sjogren’s, EDS, fibromyalgia (and more) only treat the symptoms and are all trial and error. I really haven’t had much improvement from many of the drugs I’ve tried. I know that Cymbalta helps me, because when I don’t take it I really feel more pain. I know that Gabapentin helps my nerve pain, because it stopped all the pain down my legs and in my feet and hands.
My blood work results are coming in a little at a time. Although I’m still waiting on a few test results, there are some results that have me worried. Lactate Dehydrogenase (LDH) levels are at the very top of normal, but have doubled since January. I also have Mild Leukocytopenia with Absolute Lymphocytopenia.
Leukocytopenia is a disorder when the body doesn’t have enough white blood cells. I’ve had low white blood cells for years, but now it has suddenly gotten worse. My LDH numbers have suddenly gotten worse, too. Both of these numbers (according to my non-medical expert research) can be attributed to lymphoma.
I wouldn’t take that too seriously if I didn’t already know that I’m pre-diagnosed stage of CTCL (Cutaneous T-Cell Lymphoma) and that the doctor said that they could expect me to be diagnosed in the future. Then, I told my rheumatologist about a tiny bump under my arm. She felt under both arms and said they were both swollen. She said the right one was bigger.
So, now she wants me to have an ultrasound. That freaks me out a little, because I don’t want to have lymph nodes that can lead to a biopsy. All I can think of is cancer.
I don’t know when I’ll be scheduled for this next test. If they don’t call me in a couple of days to schedule, I’ll call them. I don’t like the direction this might be going, but I’ll just pray that it’s not so bad. It’s always something.
@2021, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.